Their child's obesity drug was working. Then their plan refused to pay.
Debra Tyler's younger daughter was always on the larger side. She was only 5 when doctors noticed her lipids were elevated, 8 when they put her on cholesterol-busting drugs, and 11 when she faced the danger of liver failure - a condition typically seen in those decades older.
"We tried everything. Nothing helped her," said Tyler, who lives in Killingworth, Conn. Not a diet and exercise program. Not countless hours of counseling.
It was then that doctors turned to Ozempic, a Novo Nordisk medication that is part of a new generation of diabetes and weight-loss drugs, and it worked almost overnight. The girl's weight dropped, and her liver function numbers bounced back up. The Tylers were elated. But then, like so many families with health-care challenges, they ran into a brick wall of claim denials. Debra Tyler's employer changed insurers, and the new plan refused to pay for the $1,331-per-month treatment because it was an off-label use of the drug. Ozempic is approved for diabetes in adults. Her daughter was prediabetic and a kid.
Desperate to address the girl's worsening health problems, the Tylers were caught between implacable, opposing forces - a drugmaker that had set mind-blowing monthly costs for medications that might need to be taken for life, and a health insurer that refused to cover them.
Childhood obesity and a slew of related health problems, including Type 2 diabetes and fatty liver disease, are a huge and growing crisis in the United States, with more than 14.4 million children diagnosed with obesity. Several new medications are potential game changers, but drug companies have priced them beyond the reach of most American families without insurance coverage.
And despite recommendations by the American Academy of Pediatrics that the drugs be used in some children at risk of serious health problems, many insurers have not signed on, citing their high prices and limited track records.
Only an estimated 30 to 40 percent of commercial health insurance plans and 19 Medicaid programs cover anti-obesity drugs at some level, according to a 2022 Urban Institute report. And many impose additional barriers to access, such as requiring prior authorization - a bureaucratic hurdle that often requires complex paperwork - or limiting the coverage to adults.
The newest of the obesity medications, which were only approved last year and which are likely to be used for a lifetime, face especially high coverage barriers because they carry the stigma of being considered "vanity drugs" for some people who do not have medical conditions.
"What we are seeing with obesity drugs is that many people who need them are having to pay the full price out of pocket," said Aditi Sen, director of research at the Health Care Cost Institute, an independent nonprofit organization based in D.C. Trying to figure out how or if they can afford a drug, she said, "can be a huge time and psychological burden, and it can delay or derail treatment."
For Debra, a nurse practitioner, and her husband, Dan, who runs a garbage-collection business, the coverage denial by UnitedHealthcare set off months of what they felt were essentially medical experiments on their daughter. An external reviewer brought in as part of an appeal suggested another, cheaper drug. Not only did it not work, but it had side effects. Liver numbers for the now-12-year-old veered into ever more dangerous territory and her blood sugar plummeted, making her feel fatigued, dizzy and unstable while walking.
The Tylers became obsessed with trying to piece together treatment for their daughter from free samples of Ozempic and other medications from their doctors. They made multiple appeals of their health insurer's denial and pleaded with state regulators, the drugmaker, even Debra Tyler's company's CEO for help.
A UnitedHealthcare spokeswoman declined to comment about the Tylers' case and the company's approach to covering obesity drugs. Such decisions, she said, are "determined in accordance with the terms of a member's plan and applicable law."
The onus is on the consumer. "You're going to negotiate - with your doctor, your health plan, sometimes the drug companies - and it might take four to five iterations over many months" to figure out whether you can afford the medications you need, said Gerard Anderson, a professor at the Johns Hopkins Bloomberg School of Public Health who studies insurance systems.
It can be even trickier in the case of the newest drugs, like Ozempic, with drugmakers and insurers pushing the blame onto each other for insurance denials and high costs.
"While drugmakers create lifesaving treatments and breakthrough cures to address obesity and other diseases, we know the problem is the price - a therapy is useless if no one can afford it," said David Allen, a spokesman for America's Health Insurance Plans, an industry group.
He added that some of the recently approved treatments "have not yet been proven to work well for long-term weight management, and can have complications and adverse impacts." Patients backslide as soon as they're off the drugs, for instance, and some experience headaches, upset stomachs and nausea while they're on them.
President Biden in his State of the Union address this year zeroed in on the runaway cost of prescription drugs, stating "too many of you lay in bed at night staring at the ceiling, wondering what will happen if your spouse gets cancer, your child gets sick or if something happens to you," and a number of states have begun taking steps to cap the costs of certain medication. But much of the focus and momentum has been on older drugs such as insulin, rather than newer treatments.
Drugmakers contend the high costs of new drugs are needed to offset their investment in research and testing.
In a statement, Novo Nordisk noted it has introduced discount coupons, which reduce the treatment's monthly costs by hundreds of dollars. The company also took a swipe at insurers, saying it "believes the most effective way for the millions of Americans who need anti-obesity medicines to be able to access and afford them is to ensure these medicines are covered by government and commercial insurance plans."
An unusual lobbying coalition that includes the pharmaceutical industry and the NAACP has been pushing Medicare to cover obesity medications - not just because of its 65 million participants but also because private insurers often follow its lead. But some experts warn that a win could ultimately translate into higher insurance premiums and taxes for everyone. Writing in the New England Journal of Medicine this month, researchers pointed out that net prices can be more than 20 times the price of older weight-loss medications. If only 10 percent of eligible patients got the newer drugs, they calculated, it would cost taxpayers more than $26 billion.
If everyone diagnosed with obesity were treated, it would basically break Medicare, exceeding the entire Part D budget, the study found.
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$1,331 a month
It had never been clear to anyone why Tyler's second child struggled so much with weight. The seventh-grader, whose name has been withheld to protect her privacy, is always running around playing this sport or that, including swimming and basketball, and loves to take care of the three goats and a horse that live on their property in their semirural town.
Her diet was also healthier than that of many other American preteens; the family had reduced carbohydrates years ago at the recommendation of specialists. And at the start of the coronavirus pandemic three years ago, she became a pescatarian, which should have helped with the weight gain, except it didn't.
Genetic tests indicated possible links to a rare condition characterized by hyperphagia, in which a person can eat and eat but never feel full. But her doctors did not think that was the full story and continued to run tests.
They put her on statins for cholesterol management, Metformin for prediabetes and Synthroid for possible thyroid issues. (Although tests did not show a clear problem, an underactive thyroid slows down metabolism, making it difficult to lose weight.) But none of those had made much of a difference.
In the fall of 2021, things reached a crisis point.
At 5-foot-4, she had hit 180 pounds at age 11, and her body mass index was 32.85, well in the range for obesity under Centers for Disease Control and Prevention guidelines. But the more significant problem was that fat deposits had accumulated in her liver. The buildup can lead to permanent scarring, and in the worst cases, the organ, which filters the blood to break down and remove harmful substances, can stop functioning.
Ozempic, which is approved for the treatment of Type 2 diabetes but is often also used for weight loss, contains a compound called semaglutide, which mimics a hormone that increases insulin and suppresses appetite, making a person feel full. For Tyler's daughter, the changes were almost immediate. Her weight dropped, muscle mass increased, and fatty liver percentage plummeted from 21 percent to 7 percent.
The effects were psychological, too: "Everything was positive," Tyler said. "She felt good." Her daughter recalled in an interview that she had a lot more energy for sports and no longer craved food.
But two months later, Tyler received a letter saying her employer had switched insurance carriers and the medication would not be covered since it was an off-label use of a drug approved for diabetes.
The insurer was not swayed earlier this year when the American Academy of Pediatrics released new guidelines recommending earlier and more aggressive treatment with medication to head off complications like the ones Tyler's daughter is facing.
Tyler gathered letters of support from the specialists who had seen her daughter over the years - including doctors at some of the nation's top pediatric obesity clinics at Yale New Haven Hospital, Mount Sinai and Mayo Clinic - and she appealed to the insurance company.
She even turned to state regulators. "Dear Connecticut Insurance Department Reviewer," she wrote, detailing her child's condition, the medical evidence for the drug and recounting how her daughter had been subjected to "bullying by adults and kids because of her size."
"It's hard," her daughter said, about seeing improvements in her weight and health, only to slide backward when she had to go off Ozempic. Other medications made her feel "nauseous and shaky." Her doctors then recommended Victoza, a once-daily non-insulin medicine that lowers blood sugar, but insurance denied that as well.
The state insurance employees who took Tyler's follow-up calls were sympathetic but said they could not force an insurer to pay for something not specified in its contract.
"I understand medications can be overused and for the wrong reasons," Tyler said. "But when we have this much proof that my daughter needs this medicine and it's working, what's frustrating is that an insurance claims person sitting behind a desk can just say 'no, not approved' because it's more convenient or cheaper to do that."
Meanwhile, an external reviewer for the insurance company recommended her daughter be put on Trulicity, an Eli Lilly drug typically used to treat diabetes. At the time, it was about $770 a month, compared with about $900 for Ozempic.
Trulicity had no impact on the girl's appetite or weight. But it did make her feel queasy and fatigued because it lowered her blood sugar. Her doctors pulled her off it, and for months she went without any drug treatment at all.
Early in January, Tyler was excited to hear that on Dec. 23 the FDA had approved Wegovy, a Novo Nordisk drug that contains the same medicine as Ozempic but comes in different dose options for those 12 and older with a variety of obesity-related issues. The decision was based on a New England Journal of Medicine study that described how adolescents on the drug saw a 16 percent drop in BMI, 5 percent or more weight loss, and improvements in a range of cardiac and metabolic measures by the 68th week, or about a year and four months.
But UnitedHealthcare denied this drug, too, referring to Wegovy as an "appetite suppressant" that is part of a list of excluded categories of medications in their plan, according to a letter the company sent to the family.
This time, Tyler appealed to her CEO. A former pharmaceutical executive, he made some calls but had no authority to override their decisions.
With her daughter's health continuing to deteriorate, Tyler and her husband began to consider more radical options, including seeking loans or dipping into savings. She called six nearby pharmacies, and the least she could get a month's supply of Wegovy for was $1,331. But because the drug was new, one employee mentioned she could get a $500 discount coupon from the drugmaker, bringing her cost down to $831.
In February, Tyler convinced herself that if she paid for the drug herself for a few months, she could work with doctors to build the data that might persuade her insurance company to pay for it. Tyler, her husband and her daughter made the trek to the local pharmacy together. She took a stack of cash out of her purse - $831 in mostly small bills - and pushed it across the counter.
Her daughter has a follow-up visit scheduled for June.
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